Scleroderma & Raynaud's UK (SRUK)
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Reflux and heartburn

Hi all

I have been suffering with bad acid reflux, indegestion and heartburn since November last year it got considerably worse over Christmas with me being woken in the night choking. My asthma has been worse and according to my GP it is because of the reflux setting my airways into spasm I was already taking domperidone when needed but now I have to use it 3 times a day, my GP also added Lanzoprazole 15mg which after a month did nothing so last week it was increased to 30mg I also use gaviscon in large amounts particularly at night. Last night was particularly bad and haven't had much sleep my stomach feels full and even when standing I can feel the reflux!!! When I saw the Rhuemy a couple of weeks ago and I told her she said that I might have to have Ranitadine added to all the other meds and to see my GP about it. I know there are lots of you that suffer with this and so I was hoping that maybe one of you would have some sugestions. I have tried sleeping propped up but I usually slip down and due to awful cacific bursitis in my hips, bum and shoulders there are not many positions that I can sleep in. I take Pred 8mg Mycophenolate 2grams risodronate once a week and lots of others meds which my GP thinks is not helping but as I have osteopenia not something I should stop taking unless it absolutely necessary

Any help would be appreciated

Thanks Tracy

30 Replies

It is difficult to suggest anything that you are not doing already except perhaps to watch your food. No spices. Eat small amounts several times a day rather than big meals.


Thank you for your reply I already have small meals it's just at the moment they are getting smaller, I will monitor how I am doing over the next couple of weeks and if things do not improve I will contact My GP



I agree with the eat little and often. I get acid reflux sometimes after eating but also if my stomach is empty.

Sleeping with a couple of pillows helps as when its a problem I cant lay flat.

Something I have been meaning to do but havent got around to it yet is keeping a food and drink diary and entering all the stuff I am putting down my throat to see if there is a pattern that can be learnt from.

I was wondering if anyone else had done anything like that.


Hi Thank you for replying I get the reflux on an empty stomach too I already know of some of the foods that make me worse but it sounds like a good idea to try to keep a diary. Last night I didn't eat after 6pm and had last drink of water at 8pm with my last lot of meds and I did have a better night, I will try this for a few nights to see if it continues.



Hi I started but due to becoming so poorly and hands becoming so claw like the pain was too much, from when I was first diagnosed with this diseases I was 10 stone and within 6 months went down to 7stone, now 12 months into disease I'm 8 stone eating still a problem but I keep to what I feel comfortable in eating, ie yoguarts cereal chicken, veg ice lollies and ice cream xx


I keep meaning to start a food & drink diary as my stomach is getting upset more and more often these days; think I might have a problem with dairy products.


Hello Tracy

I have the same problem which has been ongoing for years. I am on domperidone, lanzaprazole and ranitidine and I often wonder whether they really do anything (ha ha)

I get a terrible soreness whatever I eat - and i do stay away from spicy foods which I love Boo Hoo - just had another endoscopy but as before no scarring and all looking good. All I can presume is that maybe the muscles in the oesophagus and stomach are not working as they should. I think the domperidone and ranitidine are supposed to move the food through the stomach quicker so it does not stagnate .......

Try not to eat too late - I sometimes find that hot choc made with milk settles the stomach

I have a clinic appointment in April so maybe they will review my meds and try something else.


Hi Anteater

Thank you for replying I know what you mean about wondering if the meds actually do anything!! I have been trying to avoid having another endoscopy but I think it may well be looming if I don't start picking up.

Last night I didn't eat after 6pm and had last drink of water at 8pm with my last lot of meds and I did have a better night, I will try this for a few nights to see if it continues.



I take Omeprazole twice a day and Ranitidine at night, as well as a good swig of Gaviscon. These just about keep the reflux under control. I have also tried sleeping with 2 pillows, but just slip off them. What I find helps most is eating small amounts every couple of hours, if I don't I know I'm in for a bad night. I also have hot choc at night, and a biscuit. This also seems to help. You need to find what helps and what doesn't, as bad reflux can result in acid going into the lungs. Keeping a diary would be good idea.


Hi Yorky

Thank you for replying. I slip off pillows too just don't seem to be able to stay upright although even if I did I would still get the reflux as I get it through out the day too. I get through so much gaviscon I am thinking of taking out shares in the company as I am sure I am keeping their profits up ha ha ha.



Hi Tracyone. It sounds like you need a different or stronger Antacid to protect your stomach.

When taking strong pain relief and some other meds it can cause the lining of you stomach to become inflamed thus causing acid reflux and stomach discomfort.

I used to take Ranitidine(Zantac) 150mgs twice a day for a long time which was very effective but, when I started taking stronger pain relief I found it not so effective. My GP then prescribed Omeprazole 90mgs once a day which has done the trick. I have no stomach problems and I take all sorts of medicince for other medical problems I have.

I have never had any relief from Gaviscon. It's mainly for indigestion but your problem sounds to be more than indigestion. Try the Ranitidine suggested by your doctor and see what happens.

Good luck!


Hi graygirl1 Yes I think I may have to go and see about adding ranitidine to my other meds it's a case of trial and error at the moment but also giving everything a reasonable amount of time to see if it is working, in the meantime I am still taking inordinat amounts of gaviscon advance (it cools rather than cures for me)



My reflux at night had gotten so bad that my rheumy increased the dosage of my omeprazole. I take it before i go to bed and it has helped. Good luck.


Hi all..ive just been reading all the comments and thinkn to myself its mad to come on here and see so many with the same problems. Iv been wondering about my stomach i have same problem but wondered was i the only one sleeping with my bed raised i have 4 pillows under my mattress as the pillows on bed kept slipping down but i am still slipping down with them under mattress. I spend most of my night pulling myself bac up the bed.last nite i thgt is this it? will i always have to sleep this way to protect my gullet frm acid.Can the lower spinchter muscle not heal and go bac to normal or is this it will we always have an opening? My doc sen mine was wide open but will it close? no one tells u these things and how long do we have to do this for? Another thing i take gaviscon at nite doc said it will act like a protective cover but do i take this forever too? im only on 20mg omeprazole once a day.Oh and also iv noticed that im recently coughing i seem to have more flam in my back of throat like ive always to clear my lungs iv never had it b4 and wondered is this related its been here for 5 wks?i had fluid on my vocal cords due to the acid and my voice changed tone but now people notice iv got my voice back again so lying this way must be helping..oh another thing iv been taking magnesium for 1yr doc said it served no purpose i wondered does anyone else take it

Hope u are all well today

My water bottle goes with me everywhere its been a gr8 help on these so cold days


I'm lucky that my reflux isn't too bad but when I've had a bad chest I've slept propped up. One trick that has helped me is using a v shaped pillow in between the other pillows and don't tend to slip down too much. I had it in the house from when my daughter was a baby. Think some shops still sell them. Think you can get gaviscon on prescripiton if you're not already. I use a prepayment card for prescriptions which works out a lot cheaper for me, saves me a lot of money. Hope you feel better soon xx


Thank you for replying Bubbles01 I already get gaviscon advance on prescription a pint at a time!!



Hi - I've had reflux for years and am now on 3 domperidone a day plus lansoprazole which don't always stop night time reflux, but one thing that I've found really helps, and which a gastroenterologist told me about 3 years ago now, is not to eat for 4 hours before lying down and to lie on my left side. I find the 4 hours difficult to achieve at times but then take gaviscon too, which helps a bit. I find the left side thing difficult because my left side is my worst - for some reason I have more pain and more problems generally on that side of my body.

Anyway, I have my bed raised on two house bricks (under each leg) woud you believe - doesn't look very glamorous but don't care. I found it really difficult at first but, if you can afford a memory foam topped mattress, they really help - you don't slide down.

Sorry fruitpastle but your oesophagus will never close - I'm assuming you've got scleroderma and Raynauds? Apparently Raynauds also occurs internally when you have an attack and lack of blood causes damage, and our bodies use collagen to repair the damage: we are abnormal in that our body doesn't stop producing collagen once it's repaired the damage. It carries on producing it and the result is hardened tissue. I believe that skin affected in this way can soften somewhat over time, so maybe the oesophagus can, but I've not heard that. Mine's been open for at least 14 years and the sphincter from my stomach to my duodenum is also open.

Have just remembered something, I try and follow the Hay diet, at least the part that says don't mix starch and protein as in combination they slow down digestion. Also you should eat fruit before a meal as it is digested more quickly. My gut definitely slows down if I go back to 'ordinary' eating for a time (every Christmas for one!!). Though it seems to have slowed more anyway lately as I'm finding I need to take laxatives every 2-3 days so wil be asking about that when I go back to hospital. As they've recently discovered another patch on my left lung that looks like more fibrosis it seems my disease has been / is active again which might explain the gut too.

However, back to foods - well worth trying eliminating things one at a time and seeing if anything helps. I avoid dairy as much as possible - though I occassionally have to binge on cheese or ice cream, then I am crippled with reflux. Sadly, wine and spirits make my stomach sore too these days - but it saves me some money as I don't drink as much as I did (worth a sore stomach sometimes though isn't it :-))

Hope you can get things improved a lot if not cured Traceynoe, and everyone else too.

Best wishes


Barbj thank u for there was me thinkn if i do all the things docs told me maybe after awhile it will close again and have normal functioning :-( awell there goes that idea .Im a wee bit shocked!

You say you have had this for 14yrs.Can you tell me does the collagen only thicken when its trying to repair your body when u have a raynaurds attack? Or is it always producing collagen. please give me some tips and how you've coped for 14yrs. i stupidly think that if i keep warm all the time my body wont produce the collegen so ive been going everywhere with my hot water bottle.i stand outside my wee 5yr olds classroom with it when i pick him up i dont care what people think i just say iv a circulation problem. will all these things i do really help or am i just kidding myself? is my body gona make my organs hard no matter what? i feel a bit deflated and sad i miss myself :-(


Hello fruitpastle, I'm so sorry if what I said has worried you. I think that once the damage has been done, then it doesn't get any worse in that part of your body, and it only gets worse if the disease is active. But i don't really know and should have made that clear -I'm sorry. My condition has hardly changed in those 14 years until recently. And I still have Raynauds attacks despite taking Nifedipine. BUT, I do always try to keep my body warm if not my extremeties, hot water bottles, thermal underwear - you can get some decent looking ones from John Lewis on line - fleece tops, jackets, etc. It won't be much consolation I know, but I miss myself too, I miss not being able to wear high heels - I can't stand the pain under the balls of my feet - nor could I balance in them these days :-), I've had ulcers on my legs and have to wear compression stockings all the time; the thigh length ones won't stay up on me as my hips are quite narrow so all suspender belts tend to slip down over them; so I wear the knee length ones and therefore have to wear trousers most of the time. I find it difficult to get trousers either long enough or slim enough over the hips and feel so much less 'attractive/feminine' than I used to. And then there's the thick gloves and flat shoes and layers of clothing ... oh my goodness, what this flipping disease does to us!!! Yet I am one of the lucky ones whose disease is progressing slowly.

Whatever you do WILL help you, keeping warm is definitely a good thing to do, and trying not to worry, and relaxing when you can and enjoying yourself will all help. Your body is not going to make your organs hard no matter what, it depends on how your disease progreses and don't forget that there's a lot more they can do these days to slow it down. I'm now 57 and the first consultant I saw said he thought I'd had it since childhood - which, with hindsight, would not surprise me actually. I am hopeful that my disease will continue to progress slowly, and I hope that yours does to. In fact I hope yours remits which apparently it sometimes does.

Whatever happens, try not to be frightened of it (forgive me if that's not how you feel - I sometimes do, and sometimes my future looks bleak to me) try and stay positive - you can handle it, and, with advances in medicine we all have a better chance of not ending up in an awful state. When I remember(!) I remind myself of that and I still have hope for my future and how it might change for the better instead of the worse.

I have only recently had to cut down on the number of hours I work - get too tired to do a 37.5 hour a week every week now. But I hope to keep working as long as I can and still hope that one day I might meet a man that I want to have a long-term relationship with: not sure I could cope with marriage having never been married and loving my own space and doing what I please :-).

Try and keep positive fruitpastile, and don't give up hope, no matter what, you can handle it. My thoughts and good wishes are with you.



I am scared and to all my family and friends im just letting on!! im the type of person that throughout my life i have appriecated everything i take nothing for granted.i worked in the orphanges a long time ago b4 i married and had kids

.i have so much appriecated my food and simple things in life i have always thanked god for what i have and now i feel so scared that im gona end up tube fed and not being able to breathe ..all iv ever wanted was kids and to grow old and die of old age... im 45 with 5yr old and 7 yr old they r my life.i just feel so scared that my insides r gona fail me and im not gona be here for them iv not been a smoker nor a drinker iv always power walked and im usually an outside person i grew up on a farm digging spuds in my spare time doing farm work .i feel my i can do all the things with my boys without worring if i get cold is the collagen being produced and is that time off my life...

iv been so positive up till now i really thgt my gullet would close but to think im always gona be like this i cant lie down flat with my wee boy putn him to bed ..i kneel now on the floor beside him an he says get in mummy so i have to go get gavicson and pillows b4 i do this ..its all the little things thats starting to get to me .

my mum has alzemirs and i miss her so much i want to just go to her her and cry and for her to tell me its all gona be ok but i cant i have to put on a big act letn on im strong and be thankful i dont have cancer.. im making dinner for my family and hate the way i feel when i sit down to eat with them im afraid of choking then the heart burn after ..i am a strong person and am usually ok but iv just gotten sad this wk because i think its just hit me that im never gona be the same again sorry for being sad hav to go finish making dinner il be bac on later and thanks for ur words leg ulcers scare me as my mum suffers from them shes 83 and has had a huge one for 2yrs and in awful pain

how can u work?


Hello again Fruitpastile

I wish there were some words I could put down that would make everything right for you :( What I will say is that all the physical work that you've done in the past should stand you in good stead - you are probably much fitter than the average and that's always gives you an advantage to my mind.

I'm sorry to hear about your mum, mine died about 3 years ago with vascular dementia - it is horrible to see them suffering and their personality disappearing isn't it.

I like to think I'm a strong person too - we were brought up to get on with things and I keep working mainly because I have to. I won't say it's been easy as it's been a dreadful struggle at times - plus I've had quite severe depression (still suffer from that and anxiety) and sometimes I think it's a miracle that my employers have kept me on. It was a double edged sword for me when I got my diagnosis: it was so good to know that everything I'd been experiencing over the years was NOT all in my mind, but like you I was also scared, knowing that I was never going to be 'alright' again. At that time I'd begun to feel better mentally and was doing a massage course, my ambition was to start my own business in my spare time and build it up until I could work part time in a 'steady job' to give me some guaranteed income, and part time for myself. I did carry on and started to do some evening work. It was not too bad when I was feeling OK, but at other times it was such a struggle - and that was with 2 clients less than once a weekl. I had to accept that it was too much for me and gave it up.

However, I have since then managed to study part-time and get myself a law degree which I am quite proud of. And I am able to make use of it in my job which is good and keeps my brain going.

I still act as though I can do this that and the other in a week, and then get frustrated and upset when I can't - so I haven't yet accepted that part of the illness I don't want to rest, I want more social life, not less!!!

As I said before, I still have times when I get afraid of the future, I have visions of a bleak lonely old age. But I'm lucky in that my deterioration has been slow to date. And I feel that I can still achieve things - not sure what mind you! :-) Funnily enough, my work helps me keep going - gives me a purpose I suppose. My friends also help me keep going of course. I am sure your children and your innate strength will keep you going too and I hope your disease progresses slowly. But don't hide all your feelings from family and friends, as you probably know, that's no good for us either - it only causes more stress and we don't need that!!

As for the ulcers, the first one was awful until I finally got referred to the tissue viability nurses. They were fantastic - the bandages from toe to knee that I had to have on for 6 weeks or more (and keep dry) were not so much fun. But I got through it and subsequent ones. Because we do don't we? And I haven't had one for a good number of years now - my sexy (ha, ha) compression stockings see to that.

I am a bit of a collector of quotations and one of my favourites is by Elisabeth Kuber-Ross "Learn to get in touch with the silence within yourself and know that everything in this life has a purpose". And I do believe that I have learned a lot more about myself and about others because of my illness, and I've met some lovely people whom I wouldn't have otherwise met.

Sorry for pouring out all my stuff. I hope you begin to feel more positive soon fruitpastile. I don't know whether you are lucky enough to be seeing a scleroderma specialist but, if not, I'd definitely recommend finding out if there is one not too far away from you and asking your GP to transfer you. It's well worth it.

Keep in touch.



Hello BarbJ

Thank you for ur kind words.I feel a wee bit better today.I had my Echo scan today and i have been worried about that but it was okay.I dont find out anything yet as I have to wait till im called an then they will tell me about my lungs and heart together.I live in n.Ireland and i have only seen the scleroderma nurse once that was in dec past.

My GP dosent really know too much about this illness so I dont tend to ask her anything much I have now seen 2 docs higher than her but its the waiting on appointments it takes forever!!

I take my affirmations from Louise Hay im sure u know of her.When i get frightened i read her book.

Well done for working and getn a law degree. Its good for me to hear other peoples stories so thanks for sharing with me

I have looked up the hay diets and will take your advice.

I have thgt about compression tights.Im sure leg ulcers will come when im older as my grand mother had them all her life and my mother looked after her frm she was 14 til 32 until she married and had me, then my uncle had them nearly got his leg amputated at 70 they were so bad but died b4 the opperation took place and now my mum is on her 3rd big one so it runs in the family.

They are so sore.

I love quotations too and poetry..

Thank you for takn the time to reply i am calmer now and it really helps me knowing that there are people here that understand all we feel our worries and fears.

I will be in touch hope all is well in your world.



Hello Dee - I'm glad you're feeling calmer, it is so hard at times. I do know and like Louise Hay and I'm a bit of a collector of inspirational sayings from all kinds of sources.

You must definitely look after your legs as well as you can. I'm sure you know to keep them as warm as you can and your skin moisturised, If you do ever get a cut on one of your legs make sure you sit with it up as often as possible making sure (you probably know this too) that your foot higher than your hip. The tissue viability nurses told me that and I try and sit like that when I can. It's a good reason for putting your feet up and reading some poetry :-)

This site helps me a lot too - like you say, just knowing that someone else really does understand and shares similar worries and fears.

All is OK in my world at the moment thank you. Especially as it is my non-working Friday tomorrow. Since last August I've being having every other Friday off and I LOVE my 4 day weeks. I hope to have a 4 day week every week in a few years time - I'm just hoping my health will let me keep going as I am until then, and beyond of course :-)

Take care and keep warm - can't believe they've given out snow for tomorrow, brrrrr - am glad I can stay in by the fire.

Best wishes



Thank you Barbj for replying, I know that some foods make it worse and unlike you I know that dairy foods can be one of the worst offenders. I have never heard of the hay diet but I will look it up and see if it is worth a try I don't eat meat, but that is because I am allergic to it, I eat fish and otherwise a very healthy diet and I haven't touched alcohol for over 10 years. I know that it's trial and error and finding what is right for me just hope I find the right solution soon as I don't want to lose to much weight again as I have only just got back to a normal size.



Hi Tracynoe - I wish I could be as disciplined as you with the alcohol. And I don't know what I'd do if I couldn't eat meat - though I do try and stick to white meat, I cannot imagine life without it entirely. Sounds as if you have more than you fair share of soem nasty illnesses to deal with, and it must be really hard for the docs to tell whether some of the meds you have to take are making it all worse. Pity they can't have you in hospital and monitor you while they try removing one or another .. I don't know, they say in the future they'll be able to dispense drugs tailor made for the individual - roll on that day.

I hope you find the right solution soon because, as you say, we need to keep our weight up - first rheumatologist I saw told me that and I found out the sense of it when I had to go into hospital and they put me on steroids. I'm one of those (apparently rare) people on whom steroids have the opposite effect. I must have lost at least 2 stone in about 10 days (and even the smallest movement was horrendously painful) and came out looking like a skeleton with my clothes hanging off me. If I had not been about 10.5 stone to start with it might have damaged more than my looks.

The Hay Diet is now mostly sold as a weight loss solution but don't be put off by that, it started out as, and for me remains, a weight maintainer - I've actually put more on, but not a lot which I'm glad about. I think I've stilll got an old cutting somewhere about it where people relate their problems and how it's helped them. It's not a sales pitch type of think just a magazine article. Will see if I can find it and - was going to say get is scanned and send it to you but I can't can I - will just have to type some of them out.

Best wishes



This is not an attack on doctors as god knows we all need them. But in most cases their learning is based on books whereas we have the real life experiences to relate to. When a doctor gives you an instruction its worth following it. But if it doesnt seem to work for you then I often deviate from the stone cold advice.

After all the thing everyone wants is a successful outcome to a problem.


I agree with you overnighthearingloss sometimes Drs find it hard to have a patient that doesn't fit within their learnt diagnostic criteria, I know from what I read on here that I am very fortunate to have a GP that knows when I go to see him that the rule book goes out the window and we find our own way round problems I have heard him tell some of his students this too, so hopefully there will be some informed new GP's out there that remember being faced with someone that went against all they had been taught.


Hello. I take 20mg of Omeprazole in the morning, and another 20mg at 8pm. I usually eat my evening mea between around 6.30pm - 8.30pm.

I then always make sure I leave 4 hours before I lie down/go to bed (without eating anything else). I have about 4 pillows to sleep on, and I always start off sleeping on my left side ( as I read somewhere that it helps with reflux). I do avoid tomatoes or orange juice in the evening. Usually all these things work for me. But I find I really have to do all of these things in combination to avoid the reflux - most importantly, leaving 4 hours between eating and bed. It can be difficult if I am at a friend's house, and they don't cook an evening meal until 10pm, because then I just think 'Oh dear. Now I can't go to bed until 2am'. But luckily, I am a night person, so it's not too much of a problem.

Also, if I ever go out for an Indian/spicy meal I am always aware that I will have to leave 6 hours before going to bed.

But I just find that being aware of all this means I can manage the reflux. I hope some of this might help you? I know that the choking/reflux feeling is really horrible.


I have just finished reading everybody's input. I have systemic sclerosis and pbc. I went many years (about 18) suffering appalling reflux and joint pain without being properly diagnosed. My oesophagael spasms were so severe I could hardly breathe and then intercostal muscle spasms would squeeze my diaphram so tight I was once unable to move at all for 27 hours. A sudden spontaneous collapse with same in an empty hospital corridor was the turning point. A surgeon was convinced I was having a heart attack. When it was clearly not the case, he told me to get my gp to refer me for proper diagnosis. I had been working and spending loads on accupuncture to get me through. I hardly slept for acid reflux. Now, 22 years on, life is that bit better. (My voice also changed due to the damage of acid reflux). Last year I underwent oesophagael monitoring. It transpires that my oesophaegus has literally turned into a 'drainpipe' with no peristalsis action whatosoever. The lower sphincter is passive.

I think we are all a bit different with regard to what medications help. I take both cimetedine and lansoprazole at bedtime. Strangely, Gaviscon does not help but Rennies do. I eat on average about 40 Rennies each week. I do not cope well on too much fruit and veg. The one thing I can eat without detrement at any time of the day is a steak. I find this odd since it must take quite a bit of digesting, yet I could eat it last thing before going to bed and fall asleep immediately. I bank up my seven pillows to slope very gradually to avoid slipping down off them during the night. My son-in-law says he can always tell when I have been to visit as he finds Rennies under my pillows. lol. Occasionally, my usual dose of tablets fail me, and I find Domperidone is the panacea at night on these occasions.

I await an appointment to see a liver specialist soon as I have abdominal distension which is very noticeable and gets commented on quite frequently. I am otherwise slim so it is very odd looking. I may hopefully be helped to reduce it a bit. Clothes are an issue as I have to buy a size larger to accommodate my large abdomen. I am female so cannot have it passed off as a 'beer gut' like men do. And at sixty-three, It cannot be mistaken for a baby.

I wish all of you well, particularly during this punishingly bitterly cold weather. As if Winter is not already long enough! I expect like me, you glimpse longingly at your Summer clothes and venture out to see what plants are surviving through the snow and frosts.


I dont know this is right or wrong but i do vomit daily before bed and this solved all my problems. I took all kind of PPIs n drugs like rantidine. I also took lactic acid bacteria for 7 years and duffered through chronic COPD. That resulted in taking budsonide. I suffered the time when i thought, i wont live more. And then one day i realize that if i vomit intentionally.. It helps and i dont have to take any medicine. From that day since last 2 years i am vomitting before going to bed and i am again enjoying mornings and can sleep well and can enjoy the things around. I want to know pros and cons for same.


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